With cancer and dementia, the caregiver must be hyper-vigilant

Focusing on healing one condition is tough enough, but two? This can feel about as hard and confusing to the caregiver as it is to the patient.

For example, dealing with cancer combined with dementia can present a host of conflicts, complications and questions. Unfortunately for the patient, recent research by the Moffitt Cancer Center in Tampa, FL indicates a dramatic difference in the life expectancy between patients with cancer alone and those with cancer combined with dementia. People with both cancer and dementia die much sooner than those with cancer alone. The accounts for this are unclear and speculative. One explanation is that there’s often an uncertainty with diagnosing and treating dementia in the first place and symptoms of dementia often mask other ailments. It could also be that people with dementia simply aren’t given cancer screenings as often they could and therefore the cancer goes undetected or untreated altogether. Somehow, the dementia can enable medical professionals to miss the cancer.

For the caregiver, this presents added challenges. Under these circumstances, care includes becoming an advocate for the patient by staying on top of doctors and making sure check-ups are handled regularly and thoroughly and that proper treatments are administered. Since the patient may not be able to speak for themselves or make their symptoms clearly known, caregivers are on heightened alert to spot signs of trouble and to speak on behalf of their loved ones. Of course, this leads to added stress for the caregiver. What to do?

Author and caregiver advocate, Linda Burhans laments that there’s not much out there by way of information on how to deal with cancer coupled with dementia. So she suggests that caregivers seek out and get involved in a support group, either online or in person. The idea of having a sounding board or just knowing that you’re not alone can be invaluable enough. But researchers from the University of Michigan School of Nursing found there’s more to it. Their 2012 study revealed that caregivers are more likely to have reduced stress, improved sleep, better immune function and overall physical health by being involved in an established caregiver support organization. To a larger extent, so-called “caregiver interventions” can also arm the caregiver with valuable coping skills, knowledge and a better quality of life, overall. This kind of empowerment likely results in better care of the patient and ultimately in their improved physical and mental health.

These findings are supported by the NYU Langone Medical Center, which found that support groups reduce a caregiver’s depression level, while at the same time increase their ability to react effectively to problems. Social groups, where one could gain information, learn how to recognize warning signs and manage expectations, talk to doctors, practice nursing skills, learn new ways of handling tasks, and receive feedback are most meaningful. It improves a caregiver’s self-esteem and can also help during time of bereavement. The support a caregiver receives, in effect, makes them more resilient.

Researchers agree that more standards of care protocol need to be implemented when it comes to dealing with dementia paired with cancer. As medicine advances to where we keep getting older and older, it stands to reason that more of the elderly will unfortunately suffer through both cancer and dementia together. If there’s a lack of understanding of how to deal with this now, we can hope that caregivers will have a blueprint in the future. For now, find help and strength in the form of support groups, spiritual wellness groups, friends and online resources that deal with one condition or the other (such as The American Cancer Society and Alzheimer’s Foundation of America) and stay informed on the latest treatments available. It is within every person’s right and dignity to seek and receive the best care possible. Every patient deserves it. And so do you.

Arthur retells his story caring for his mother and father, covering many common issues caregivers face through first person narration, such as: hoarding, sibling conflict, parents unwilling to be helped, finances, communication with medical professionals, guilt, anxiety, stress and shame.

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2 Comments

anonymous
on March 27, 2015 at 7:12 pm

That’s very sad, did you ever consider putting him in a hospice facility? He isnt going to get any better, and you have your own health to consider. When the time comes, please consider putting him in a facility, you can go spend time with him (as he gets worse and worse, not even knowing you or where he is) as much time as you want to.

As for people with dementia and cancer, I suppose moving heaven and earth to keep the dementia patient healthy and living as long as humanly possible is the proper thing to do. Joining a “support group” is another logical thing to do. However, keeping people alive way past their sell-by date, when they are senile and in Depends, and develop life-threatening cancer suggests look into COMFORT CARE. Patient: don’t know your name, where you are, who anyone is, and now you have cancer? Your time on earth is up…. Put them in a hospice facility when the time comes. If you have a big jolly loving family, you can have them die at home surrounded by loved ones…. You have done all you can, you cannot battle death. Time’s up.

Hi I haven’t had the opportunity to spend as much time as I’d like on this site..
In October 2014 my husband was diagnosed with terminal stage 4, grade 3 aggressive cancer. It hit us like the world had just fallen on top of us. The cancer had already spread to his brain and several other places. My thoughts have many times wondered back to my baby sister whom I lost to cancer less than 3 short years ago. She too had stage 4 cancer that also had spread to her brain. I remember what it did to her, she wasn’t event the same person at all once the cancer really grew in her brain. We had to watch absolutely every move she made; It was horrible to say the least at what cancer did to my spunky sister. She was basically a vegetable at the end of her life. Now I see signs with my husband that I saw with her. It scares the hell out of me. I am chronically ill and am doing this all by myself. It is really hard on a healthy body much less one like mine. I just want to be able to talk to someone but I can’t. I am with my husband basically 24 hours a day 7 days a week. I can’t leave the room to use the restroom that he doesn’t call for me. He is so scared and I know it I am too. I give him a sense of security I think…Just venting.